Joelle Rue was born in April of 1994. During Joelle’s 4 month well baby check-up her doctor told me to go to the hospital for an ultrasound of her head. There it was discovered that she had a large cyst and a tumor-like structure in the center of her brain. She had a craniotomy at the age of 4.5 months, which resulted in a stroke. The surgery was successful in removing her large cyst, but revealed she had a hypothalamic hamartoma that was deemed inoperable.
Joelle’s dad, Daryl, started the first electronic support group dedicated to this condition. With the help of many other early on parents; this group known as HHUGS (Hypothalamic Hamartoma Uncontrollable Gelastic Seizures) quickly became recognizable in the medical community worldwide. The future cofounders of the Hope For Hypothalamic Hamartoma organization initially connected through the HHUGS group.
Joelle was the first in the US to travel to The Royal Children’s Hospital in Melbourne, Australia for surgery by Jeffrey V Rosenfeld, M.D. to remove her hypothalamic hamartoma.
The book Saving Joelle documents our journey and the unique challenges our family faced through her first surgery in 1994, the last in 2017, and the many along the way; in attempt to cure her progressively worsening and unbelievably horrifying epilepsy. It also touches on behavioral problems, hypothalamic obesity, and the loss of a child.
This story walks through my recollection of the impossibilities, hopelessness, fears, victories and defeats, all attempts to improve Joelle’s life and in some cases saving her life.
Our story will give others suffering as parents or HH survivors themselves, a glimmer of hope. I want others to know, no matter how dark the situation may seem, have faith, and always continue to fight! We may have tried a technique to stop the seizures that you may not have heard of yet.
Here is a link to purchase the book Saving Joelle($4-$12), or email Tracirue@gmail.com if you would like Joelle and Traci to sign a copy ($14).